Tuesday, April 13, 2010

Retirement with a Brother in Law with Autism?

Rant time.

Let's say we retired to....well, somewhere else.  Let's say in North Carolina.  Or Georgia.  Or Florida.  Or even if we could afford to be snowbirds.  Which we probably could not afford.

Disclsaimer: I am far from ready to retire.  And, I don't know if I would want to move Bil if we did move elsewhere.

It's bad enough, though, thinking that we may never be able to truly retire, because of choices my mother in law made.  Without ever consulting us.

My mother in law made the choice to have Bil live with her.  a couple of years ago his name came up on something called the NYS Cares List and she refused to move him. 

I am not sure she is starting to regret it, but the last two times we have visited, she has mentioned a relative who says "you aren't alone, you have Bil" and she wonders that this relative thinks that Bil is true company for her.

But more than that, I resent that she never had any conversation with her chhildren about her expectations...or wishes, concerning us.

It's one thing making a decision for yourself but another for making decisions for your adult children.

When my husband thinks about having "that discussion" with her, the words stick in his throat.

We know Bil has a Special Needs Trust, with money saved over the years.  But I have no way of knowing it is enough.

Bil works in a sheltered workshop, so it isn't like he's going to be able to chip in that much.

We don't know what kind of housing situation will exist via NYS Cares or other NY programs when he finally needs it.  Again, those words stick in the throat.

We don't know what the pending budget cuts will mean for him.  Or what hoops we'd have to jump through to get him benefits in a new state.  So right now I'll just worry about where he is now.

It is hard to have any kind of conversation with his Medicaid Service Coordinator.  If we call she runs right to my mother in law and gets her upset.  It's like playing a game of "telephone" (the one where a group of children stand in a line. One whispers a message to the next, and on down the road, and guaranteed the person at the end has heard something totally different than the person who started the message intended. 

One time we said we wanted to talk about budget cuts and the next thing you know my mother in law is calling, wondering why we called the Medicaid Service Coordinator about Bil's finances. 

Why does the MSC run to her?  Isn't Bil her client?  My mother in law isn't even his guardian.  And that's another thing.  What legal hoops will we have to jump through to help Bil pay bills, to get medical care for him?

At least now we have met his doctor, and we signed HIPAA releases while he was at his appointment.  My mother in law said "Bil will sign the releases" and he actually did so.  Good thing, because if it was in his mind to resist, it would have been an uphill struggle.

One thing is for sure-we've been distracted with things in our own lives (health concerns, etc.) that we haven't kept on top of things the way we should have.  I'm afraid the only thing that will focus us is the day we get "that" phone call.  You know, the one that will force us to think about Bil.

Can't let things drift.  Can't.....if we ever hope to retire.  We have to take charge here, somehow.

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